Tuesday, March 31, 2009

(this is a continuation of something I posted on Facebook, I didn't have enough room so linked it to here, for my bloggy friends I know you already know all of this...)

Today 03/31/09 has been selected to End the "R" word!!! What is the "r" word? It is Retard or Retarded. For those of you who don't know me well, I have a beautiful 2 1/2 year old little girl, Ella Grace, and she has Down syndrome. With the diagnosis of Down syndrome comes mild to moderate mental retardation.

I realize that people use the word retard often, and really don't mean any offense to people that actually have mental retardation. The word is often used to put down a friend or an object as a joke. Well, let me tell you that it hurts. It probably does not hurt the person it is told to, but it hurts those standing by, those that are the parents, grandparents, brothers and sisters, aunts and uncles, and friends of someone who has an actual diagnosis of mental retardation. To cut some one down by comparing them to a PERSON with a disability is not funny.

The word brings tears to my eyes. Of course my sweet little Ella.....

does not understand right now, at 2 years old, that word. She does not understand that people would actually make fun of her, or put others down by comparing them to her. She doesn't know that kind of hurt. Yet. I dread the day when she comes home from school like this....

because someone has called her a name. I dread the day when my son, Ella's older brother Hunter, comes home upset or maybe in trouble for fighting because he was trying to defend his innocent little sister.

So, I am asking you all PLEASE STOP USING THE "R" WORD, it hurts!!! Please, parents share this with your children. Thank you so much for reading this.

Saturday, March 28, 2009

The past two weeks have been re-eval week for Ella at her school. I am happy to say that Ella has made HUGE improvements in the past year!! I mean HUGE!!

On Friday her Occupational Therapist (OT) did Ella's testing. The results kind of blew me out of the water. This test shows it's results in deficits, zero being average for a "typical" kid and then going down into the negatives. So, for Ella's self-help skills she scored a 0.00, meaning she is right on course with her "typical" peers, how freakin awesome is that? For her grasping skills she had a deficit of 0.33 and for her eye-hand coordination skills she rated a -1.33, bringing her score/average to -1.00

Great right?? Apparently not. This score officially disqualifies her for occupational therapy services when she enters pre-school. To get OT in school the child has to have a deficit of -2.00, and in private practices here in Spokane it needs to be a -1.5 So, I guess I should be thrilled that they think she doesn't need OT, but SERIOUSLY??? The kid can not even use her fingers correctly. Her new thing, when people ask her her age, she holds her hand out to me and whimpers because she wants me to put two of her fingers and her thumb down so she can hold up two fingers. She canNOT correctly do signs that involve her fingers etc. So, the plan is that they re-evaluate her OT abilities 6 months after she starts to see if she has regressed or fallen behind her peers enough to qualify. This makes no sense to me.

We are not supposed to put any limits on our kids, work with them, teach them encourage them. But not too much. Because if you do than you won't qualify for help. Ella has Down syndrome, a concrete diagnosis, one that will not change, one that puts her at a disadvantage compared to "typical" kids, always. Why is that not enough to qualify in preschool?? Whatever. I'm really scared now to see what her scores are for her speech and physical therapy evals. I have her speech results but they aren't scored the same so I don't know what the cut off for services is. Let me tell you, all hell will break loose if they tell me the kid doesn't qualify for speech therapy........

So, yes I am annoyed and a bit angry. BUT I am SOOOOO proud of Ella and all of the hard work she has done in the past year!!!!!!

Here are some pics I took Thursday morning before leaving for Speech Therapy at our house, then the pics of her in the blue swing are her in the therapy room after speech at school.

Tuesday, March 24, 2009

So here we are day 5 post op from the removal of Ella's tonsils and adenoids and I guess I can stop waiting for her to be in pain. People warned me, "day 3 and 4 are the worst," um, nope. Ella was perhaps a little more tired than usual one of the days (probably because I was waking her up to give her motrin, and when I did she thought it was time to play,) but she has not acted like she is in pain at all. Oh yeah, and the kid has 3 new teeth coming in. The only real side effect I can see is a lot of drooling, which could be from 3 new teeth, but even that has tapered off.

Now, I know that Ella has an extraordinary-scary high pain tolerance but seriously? I have looked in the back of her throat and it makes my throat hurt, it's bright red with white crusty nastiness on it (where they burned the tonsils off.) While I am of course very happy that Ella is not in pain, this is kind of scary. Ella's danger perception is horrible and it makes sense, if hardly anything hurts why would you be deterred? Her current favorite monkey antics involve her stepping on the bottom drawer of the oven, using the handle on the oven door and pulling herself up. Of course I tell her "NO, danger. It's hot, it will burn you." (as a quick note, she does this when the oven is off, when it is on I have to baby gate her either downstairs in the family room or up in her room.) But if things don't hurt then how will she get it??? Does she feel hot? Of course I don't care to test that but what the heck am I supposed to do?

OK, nuff of that. Ella is really into copying everything that everyone does. For example, after dinner the kids feel the need to have races from the living room into the kitchen. Hunter is always changing it up, he will run, then crawl, then walk backwards etc, and there is little Miss Ella doing exactly what Hunter is doing. If someone is changing clothes Ella will find something and start getting dressed herself, if you take a drink she takes a drink. But the funniest thing happened last night. I had a sudden urge to clean the bath tubs and toilets (I don't think it has ever happened before : ) so of course Miss Ella was in their bathroom with me. Ella had been standing on her stool making faces at herself in the mirror, so I got done cleaning the toilet and had moved on to the bath. Apparently I left both the seats of the toilet up, well I feel Ella standing right behind me so I turn around and there she stands with her shirt pulled up, pushing her hips into the side of the toilet. I pulled her back, pushed her shirt down and said don't touch it's icky. She again pulls up her shirt and pushes her hips to the toilet. It dawned on me what she was doing, she was trying to pee standing up, just like Hunter. I was trying so hard not to crack up, I scooted her back and put the seat down and she started hollering at me. My lovely son almost never shuts the door to the bathroom and also I still bathe the kids together and Hunter always has to pee before he gets in the bath, so obviously she has watched him a time or two. The girl cracks me up!! In more potty news, Ella continues to poop on the potty, most of the time she tells me "poop" and waves her arms in the air, doing the poo poo in the potty dance, other times I smell her tooting and ask her if she needs to go and she will go upstairs into the bathroom and start taking off her pants. A couple of times she has told me she needs to poop and I will sit her on the potty and she will pee and then sign "all done." She is a smarty pants!!!

Here are a few pics, these first 2 from this morning, nevermind the horrible hair, she was wearing a hat when we took Hunter to school because it was SNOWING! Anyhow, she is sitting with my homemade Cabbage Patch Doll that my grandmom made me when I was a kid. The doll is almost as big as her and has tons of hair and Ella finds her quite funny.

Here she is wearing my mom's coat, sitting in her new cousins infant

carrier.

Here she is putting on her brother's new undies (he got him for his birthday, I know lame gift : )

Saturday, March 21, 2009

Today, March 21st, is World Down Syndrome Day, because 3-21 is symbolic for 3 of the 21st chromosome (Trisomy 21 = Down syndrome.)

Ella is doing WONDERFUL today. We were supposed to spend the night in the hospital last night, hooked up to an IV making sure she was well hydrated. Well, during the move from recovery up to her room her IV failed, (Ella is an incredibly hard kid to put an IV in and also to draw blood from) so the nurse said she wanted to see if Ella would drink on her own before they torture her and try to start another IV. Well, Miss Ella drank like a champ, 3 adult size cups of apple juice, and ate a big lunch of mac and cheese and peaches and then proceeded to get down and run the halls of the hospital stopping at every nurse and saying "hi!" So, I asked the nurse if she could please call Ella's doctor and ask if we could go home, and of course he let us. Ella did have a roomate in the hospital, a little guy that was 26 months that had the same surgery she did and he was screaming in pain and refusing to eat or drink. As usual Ella has proved herself to be an incredibly tough girl!!! I was afraid today would be rough and that she would be in a bit of pain. NOPE. You would never know that she had anything done at all.

Here is a video I came across on another blog. It's Sarah Palin talking about what the Special Olympics means to her family. (Regardless of what you think about Palin you should watch this video, it's sweet.)

Thursday, March 19, 2009

Tomorrow at 7:30am my little Miss Ella is having her adnoid and tonsils out. Just keep her in your thoughts and prayers!

In other news, Ella's speech re-evaluation was completed last week and her scores are great! For her receptive language (what she understands) she scored as a 26 month old ( so what a "typical" 26 month old would understand) which means that she is only 4 months behind! And her expressive language (spoken/signing) she scored at a 22 month level, which puts her at 8 months behind, which for her is totally awesome!!! I looked back at her scores from this time a year ago and she has made a HUGE change!! This time last year she did not know any signs and she didn't say anything. Anyhow, I am super proud of her, and have I mentioned lately how much I LOVE her school???

Tuesday, March 17, 2009

Okay, I'm being brave right this second and am going to post pics of my new haircut. I have to admit that it is growing on me. I miss the length but my hair is SO much more healthy looking, so I'm not as bitter about the cut itself, just the stupid things that came out of the cutter's mouth : ) (If you have no idea what I am talking about read the post below!) As ElastaMom commented...

"I've been there...and you shouldn't stew...but sometimes I don't have the energy to educate when I just want to get my damn hair cut! :)"

Ha ha, yep that's all I wanted, my damn hair cut! Anyhow here are the pics, took them myself, which explains why they are weird : )

Friday, March 13, 2009

I don't know what to title this because honestly I have a billion thoughts running through my head so figured I would write down a few of them. Stay with me here.

I think I'll start with yesterday. I went to get my hair trimmed at the mall (first mistake.) The lady asked me how much I wanted cut off and I replied "all the dead fried ugly stuff." So she looks at my hair and says probably about an inch, OK. After washing my hair and combing it she changes her mind and says about 6 inches, whatever. When wet my hair was down to my waist. So she gets to cutting. She comments on how much hair I have. I tell her that it used to be twice as much, before I had kids. Laugh laugh. I told her that I even went to the dermatologist about my hair because I seemed to be losing WAY too much, especially in the front, and that the Dr told me it was because of stress. She asked me what had been stressing me out. So, I told her that when my daughter was born we found out that she has Down syndrome and that I had a really hard time with it in the beginning.....she interrupts (because I was going to say that everything is fine now and that I wish I would have known how good it would all be) and asks me "did you know before she was born that she has Down syndrome?" I say no. She says "oh" in that way that people do to me that I interpret as "oh poor lady, if only she would have known then she could have done something about it." That is strictly my interpretation. THEN she says to me "Does she live with you?" I say "Umm, yeah she's two." Then it hits me, the real question was is she in an institution? She says "oh, I just meant....." This is when I disengage. I could have gone off of her, exploded, but lets face it she had scissors by my head : ) I SHOULD have educated her, informed her that children with Down syndrome have huge potential, "normal" lives, and that they are not put into institutions anymore, I SHOULD have said a lot of things, but instead I just sat there while she chopped off my hair and stewed. In case anyone is wondering my hair went from being very long to barely clearing my shoulders, I've been told several times today that it looks "cute," just what every 28 year old wants to hear, ha ha.

Anyhow so in the past 24+ hours I have been thinking. I have decided that I will no longer tell people "no" when asked if I knew prenatally that Ella had Down syndrome. I did not know. I did have my triple screen come back to a 1 in 201 chance of my baby having Down syndrome, at that point I was told the only way to know for sure was to have an amnio which I immediately declined because I was told there was a 1 in 200 chance of miscarriage and abortion was not an option for me. Now after this they did some super ultrasound and said that my baby was a girl, and had NO MARKERS for Down syndrome. The doctor says "normal babies can have some markers, your baby has none, your chances are back to normal for your age (which was 25 at the time) I'd play those odds in Vegas.....your baby is a girl, enjoy the rest of your pregnancy." So, yeah I believed him and truly believed that my baby did not have Ds. However my new response to strangers is going to be "well, a blood test showed that I had a small chance of having a baby with Down syndrome but I declined to undergo further testing because that test had a small risk of miscarriage and I didn't want to risk my baby passing away." Now as a quick side note I do think the amnio is a necessary thing for a lot of people, I have some anxiety issues and this whole thing that runs through my mind like, if my baby dies it will all be my fault because I wanted to know. I would NEVER think that about other people, just something I do to myself. I am glad, in retrospect that I did not know that Ella had Down syndrome, though it would have saved a lot of heartbreak right after her birth, I think knowing prenatally would have caused myself and inutero Ella some major problems, and of course I wouldn't have been able to take my drugs : )

My second little epiphany is that I am not going to just sit and stew any longer. I need to just say what I want to say and not worry about what others think about me. I don't want to be mean, just informative, if I become a little bit bitchy with someone after they ask me if my kids in an institution so be it : )

About a month ago I checked out a book from the library that I had never heard of. It's called Choosing Naia: A Family's Journey by Mitchell Zuckoff. I have just one question....where in the hell was this book 2 and a half years ago???? It was already out there, I think it came out in 2000, why have I never heard of it??? This book is great. It's about a married couple who find out prenatally that their baby has Ds. This couple is highly educated (masters degrees I think) and they do a lot of research. The talk to doctors, parents, geneticist they go to church and pray and they debate back and forth the pros and cons of continuing this pregnancy. This book is highly informative, without feeling like you are reading a science book. Obviously because of the title they choose Naia. READ THIS BOOK!!!

OK now a couple of stories about little miss Ella Grace.

1st: A couple of days ago I was tucking Hunter into bed. I heard Ella go into her room and shut the door. I thought "YES! She's safe in there!" and went and took out my contacts. Well about 5 minutes pass and finally go in there to get her so I can start rocking her to sleep. I open the door to see Ella squatting down over a box of Whales crackers (walmart brand of goldfish) and her cheeks STUFFED with crackers. She looks up at me, very wide eyed, grabs the box and runs to the corner grunting and yelling at me as I come near her. Who knows how many crackers this kid ate. Of course I didn't really get on to her, I was too proud. She had opened the pantry, chose her crackers, carried them UP the stairs to her room and knew to shut the door so I wouldn't see her. That my friends is just smart.

Which brings me to my next thing. Ella is being re-evaluated in all her areas during therapy at school because we have been there for a year now. Her special education teacher tested her in the cognitive area and Ella scored as a 25 month old child, she is 30 months old. That is AWESOME!!!!

And last, yesterday I was here on my computer and Hunter came down to the family room and turned on the TV. He found one of his channels and then went back up to his room leaving the TV on. Ella sat down on the floor and began watching, Sponge Bob was on. One ended and another came on. The theme song was on and I hear Ella singing along, her version "bob bob, bob bob" in perfect harmony. Talk about bringing tears to the eyes!!!! She was singing along!!!

Wednesday, March 11, 2009

I know if you read a lot of blogs about children with Down syndrome you have probably already seen this, but it is definetly worth posting, watch this video.... it's of an interview with John C McGinley (or Dr Cox for those of you that watch Scrubs : )

I LOVE the last part!!!! It is so sad that we have to have a day to spread the word, but we do, so spread it!!!

Tuesday, March 10, 2009

Ahhhh!!! My baby boy turned 5 today! How can that be? Where has the time gone? I have to admit I was a bit teary about it all last night. I had to get together pictures of Hunter from birth till now and write what he liked to do at each age for him to take to school today. Looking back through those pictures was kind of heartbreaking. I remember before Ella was born Hunter was my entire world, every waking second was spent with just him. Then when he was 2 years and 4 months Ella Grace was born and Hunter seemed to take a backseat. Not in my heart of course but my worries about Ella consumed my thoughts. I feel like I have missed the past 2 1/2 years with him, maybe every mom feels that way when they have more than one kid...... I just feel like he has gotten the short end of the stick. I tucked him into bed last night and gave him some smooches, I said "this is the last time I will kiss you as a 4 year old." left the room and cried. Someday perhaps I will not be so emotional, ha.

So, off we go to celebrate at his favorite place, Red Robin. On Friday his best friend Rex is spending the night and we are going to Chuck E Cheese, woo hoo!

My Montage

About Me

I am a mother to two incredible children. Hunter is 8 years old and Ella Grace is 6 years old. My children are my life, my true joy. My life was turned upside down when my daughter was born and surprised us all by having Down syndrome. Since her birth I have come from sorrow and a sense of loss to greater happiness than I ever imagined and I owe it all to The Amazing Ella Grace! Contact me anytime by email fbkspeach@yahoo.com

Down Syndrome Creed

My face may be different,but my feelings the same.I laugh and I cryand take pride in my gains.I was sent here among you to teach and to loveas God in the heavenslooks down from above.To Him I'm no different,His love knows no bounds;It's those here among you, in cities and townsthat judge me by standardsthat man has imparted,but this family I've choosenwill help me get started.For I'm one of the children,so special so few,that came here to learnthe same lessons as you.That love is acceptance, it must come from the heart;we all have the same purpose,though not the same start.The Lord gave me lifeto live and embrace,and I'll do it as you do,but at my own pace.-Unknown